DOWN SYNDROME & Finestack Wilkinson

EDUCATION / SPECIAL EDUCATION / DOWN SYNDROME & Finestack Wilkinson

“Contains a wealth of information that will be relevant to faculty who teach AAC courses and to clinicians who support families...The life span approach reminds us that it is never too early or too late to support communication development using multiple modalities.” —Pat Mirenda, Ph.D., BCBA-D, The University of British Columbia, Vancouver Campus MULTIMODAL “The authors of this book take a deep dive into the complexity of Down syndrome...their multimodal/ multidisciplinary appr oaches reveal the cutting edge of increasingly effective treatments.” —Steven F. Warren, Ph.D., University Distinguished Professor,

Speech-Language-Hearing: Sciences and Disorders; Investigator, Schiefelbusch Institute for Life Span Studies MU LTI

Many people with Down syndrome—one of the most common genetically linked developmental disabilities— experience difﬁculty developing spoken and written communication skills. In this groundbreaking book,

discover how augme ntative and alternative communication (AAC) can enhance communication and improve MO DA outcomes for people with Down syndrome across the life span. Part of Beukelman and Light’s Augmentative and Alternative Communication Series, this book fully explores how interdisciplinary, multimodal AAC strategies can promote speech, language, and literacy success across many contexts, including homes, schools, communities, health care settings, and the workplace. L AAC Bringing together an interd isciplinary group of more than 25 experts on AAC and Down syndrome, this book prepares readers to: • Skillfully pair unaided AAC supports with aided AAC AAC FOR INDIVIDUALS WITH • Enrich young children’s communication and language development with AAC FO

• Use AAC to boost older children’s language skills R I

• Enhance reading instruction using AAC technology ND IVIDUAL DOWN SYNDROME • Supplement speech and improve speech intelligibility with carefully chosen interventions • Engage families as collaborative partners to integrate AAC supports into everyday life • Address young adults’ communication needs as they evolve

• Support communication and self-advocacy across health care settings with AAC strategies S WIT

Use the research-based guidance in this book to help people with Down syndrome develop stronger communication skills and participate meaningfully in their schools and communities, from early childhood H DOWN SY through adulthood.

ABOUT THE EDITORS: Krista M. Wilkinson, Ph.D., is a professor at The Pennsylvania State University and Fellow of the American Speech- Language-Hearing Association. She was Editor/Editor-in-Chief of the American Journal of Speech-Language Pathology from 2012 to 2016. Lizbeth H. Finestack, Ph.D., is an associate professor at the University of Minnesota in the Department of Speech-Language-Hearing ND ROME Sciences. She is also a speech-language pathologist certiﬁed by the American Speech-Language-Hearing Association.

Augmentative and Alternative Communication Series Series Editors: David R. Beukelman, Ph.D., & Janice C. Light, Ph.D.

experienced by the diverse range of individuals who use AAC. Developed for all affected by AAC issues, this series is

ISBN-13: 978-1-68125-412-8 ISBN-10: 1-68125-412-3 900 0 0 Krista M. Wilkinson Lizbeth H. Finestack 9 781681 254128 > FOR MORE; go to https://bpub.fyi/MultimodalAAC

Series Editors: David R. Beukelman Janice C. Light

Multimodal AAC for Individuals with Down Syndrome

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Also in the Augmentative and Alternative Communication Series:

Interventions for Individuals with Autism Spectrum Disorder and Complex Communication Needs

edited Jay Ganz, Ph.D. and Richard Simpson, Ed.D

Supporting Communication for Adults with Acute and Chronic Aphasia

edited by Nina Simmons-Mackie, Ph.D., BC-ANCDS, Julia M. King, Ph.D. and David R. Beukelman, Ph.D.

Transition Strategies for Adolescents and Young Adults Who Use AAC

edited by David B. McNaughton, Ph.D. and David R. Beukelman, Ph.D.

Practically Speaking: Language, Literacy, and Academic Development for Students with AAC Needs

edited by Gloria Soto, Ph.D. and Carole Zangari, Ph.D., CCC-SLP

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Multimodal AAC for Individuals with Down Syndrome

edited by Krista M. Wilkinson, Ph.D. The Pennsylvania State University State College

and Lizbeth H. Finestack, Ph.D. University of Minnesota Minneapolis

Baltimore • London • Sydney

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Paul H. Brookes Publishing Co. Post Office Box 10624 Baltimore, Maryland 21285-0624 USA

www.brookespublishing.com

“Paul H. Brookes Publishing Co.” is a registered trademark of Paul H. Brookes Publishing Co., Inc.

Typeset by Progressive Publishing Services, York, Pennsylvania. Manufactured in the United States of America by Sheridan Books, Chelsea, Michigan.

All examples and case studies in this book are composites. Any similarity to actual individuals or circumstances is coincidental, and no implications should be inferred.

The extract in Chapter 7, page 168, is from Büssing, A., Broghammer-Escher, S., Baumann, K., & Surzykiewicz, J. (2017). Aspects of spirituality and life satisfaction in persons with Down syndrome. Journal of Disability and Religion, 21, p. 16, reprinted by permission of the publisher (Taylor & Francis Ltd, http://www.tandfonline.com).

Library of Congress Cataloging-in-Publication Data Names: Wilkinson, Krista M., editor. | Finestack, Lizbeth H., editor. Title: Multimodal AAC for individuals with down syndrome / [edited by] Krista M. Wilkinson, Ph.D., Lizbeth H. Finestack, Ph.D. Description: First [edition]. | Baltimore : Paul H. Brookes Publishing Co., 2020. | Series: Augmentative and alternative communication; [unnumbered series] | Includes bibliographical references and index. Identifiers: LCCN 2020023168 (print) | LCCN 2020023169 (ebook) | ISBN 9781681254128 (paperback) | ISBN 9781681254135 (epub) | ISBN 9781681254142 (pdf) Subjects: LCSH: Language disorders in children—Treatment. | Communicative disorders in children—Treatment. | Down syndrome—Patients—Language. Classification: LCC RJ496.L35 M847 2020 (print) | LCC RJ496.L35 (ebook) | DDC 618.92/855—dc23 LC record available at https://lccn.loc.gov/2020023168 LC ebook record available at https://lccn.loc.gov/2020023169

British Library Cataloguing in Publication data are available from the British Library.

2024 2023 2022 2021 2020

10 9 8 7 6 5 4 3 2 1

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Contents

Series Preface ...... vii Series Editors ...... viii About the Editors ...... ix About the Contributors ...... xi Acknowledgments ...... xvii

Section I I ntroduction to Down Syndrome and Augmentative and Alternative Communication ...... 1 Chapter 1 Introduction to How Augmentative and Alternative Communication Can Promote Communication, Speech, and Language in Individuals With Down Syndrome Across the Life Span ...... 3 Krista M. Wilkinson Chapter 2 Introduction to Individuals With Down Syndrome: Genetics, Cognition, Behavior, and Language ...... 11 Leonard Abbeduto and Emily D. McFadd Chapter 3 Speech Intelligibility and Communication in Down Syndrome: Intervention Approaches and the Role of Speech Supplementation ...... 37 Raymond D. Kent and Houri K. Vorperian Chapter 4 Overview of Multimodal AAC Intervention Across the Life Span for Individuals With Down Syndrome ...... 61 Emily Laubscher and Krista M. Wilkinson

Section II Considerations for Communication Supports Across the Life Span ...... 91 Chapter 5 Integration of AAC Into Early Language Intervention With Children With Down Syndrome ...... 93 MaryAnn Romski, Rose A. Sevcik, Andrea Barton-Hulsey, Evelyn L. Fisher, Marika King, Phebe Albert, Gal Kaldes, Casy Walters, and Candace Evans

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vi Contents

Chapter 6 Language Development of School-Age Children and Adolescents With Down Syndrome and Pertinent Interventions That Integrate AAC ...... 121 Lizbeth H. Finestack and Bobbi L. Rohwer Chapter 7 Adolescents and Adults With Down Syndrome: Supporting Communication and Participation With AAC ...... 149 David B. McNaughton, Salena Babb, and Christine Holyfield Chapter 8 Assessment and Intervention of Cognitive and Social Functioning in Adolescents, Young Adults, and Older Individuals With Down Syndrome ...... 185 Marie Moore Channell and Susan J. Loveall

Section III S upporting Participation Across Valued Contexts ...... 211 Chapter 9 Collaborating With Families to Support Multimodal AAC for Individuals With Down Syndrome ...... 213 Tara O’Neill Zimmerman, Kelsey Mandak, and Gregory M. Fosco Chapter 10 Supporting Communication and Self-Advocacy Related to Special Health and Medical Needs and Services ...... 235 Stephanie L. Santoro Chapter 11 Supporting Literacy and Access to Technology for Learning ...... 259 Andrea Barton-Hulsey and Rose A. Sevcik

Index ...... 277

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About the Editors

Krista M. Wilkinson, Ph.D., Professor, The Pennsylvania State University, University Park

Krista Wilkinson is a professor at the Pennsylvania State University and Fellow of the American Speech-Language-Hearing Association. She was Editor/Editor- in-Chief of the American Journal of Speech-Language Pathology from 2012 to 2016. Dr. Wilkinson’s current research applies the tools of neuroscience, in particular automated eye tracking technologies, to understand visual and cognitive process- ing of individuals with severe disabilities, Her goal is to use this information to optimize visual AAC interventions used to support communication functioning.

Lizbeth H. Finestack, Ph.D., Associate Professor, University of Minnesota, Minneapolis

Liza Finestack is an associate professor at the University of Minnesota in the Department of Speech-Language-Hearing Sciences. She is also a speech-language pathologist certified by the American Speech-Language-Hearing Association. Dr. Finestack’s long-term research aim is to identify efficient and effective language interventions for children and adolescents with neurodevelopmental disorders, including children with developmental language disorder, Down syndrome, fragile X syndrome, or autism spectrum disorder. She has built a research program focused on developing new child language intervention techniques, better understanding the language profiles of children and adolescents with differing neurodevelopmental disorders, and measuring intervention outcomes of individuals with different language and cognitive profiles.

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About the Contributors

Leonard Abbeduto, Ph.D., Professor of Psychiatry and Behavioral Sciences and Director of the University of California Davis MIND Institute

Leonard Abbeduto is the Director of the MIND Institute, the Tsakopoulos- Vismara Endowed Chair, and Professor of Psychiatry and Behavioral Sciences at the University of California, Davis. Dr. Abbeduto’s research is focused broadly on the development of language across the life span in individuals with neurodevelopmental disorders and the family context for language development. Dr. Abbeduto has received numerous awards, including the Emil A. Steiger Award for Distinguished Teaching from the University of Wisconsin–Madison, the Faculty Stewardship Award from the University of California, Davis, the Enid and William Rosen Research Award from the National Fragile X Foundation, and Edgard Doll Award for Distinguished Research Contributions from Division 33 of the American Psychological Association. He earned his doctorate in psychology from the U niversity of Illinois at Chicago in 1982.

Phebe Albert, M.A., Doctoral Candidate, Georgia State University, Atlanta

Phebe Albert is currently a fifth-year graduate student in the clinical neuropsychology program at Georgia State University. Albert completed her bachelor of science degree in psychology at the University of Florida. She also received a Post- Baccalaureate Research Training Award through the National Institute of Mental Health where she worked as a research coordinator in the Pediatric and Develop- mental Neuroscience branch. Her current research interests are in the language and cognitive development of children with developmental disabilities, including autism spectrum disorder and intellectual disability.

Salena Babb, M.Ed., Doctoral Candidate, The Pennsylvania State University, University Park

Salena Babb is a doctoral student in the Department of Educational Psychology, Counseling, and Special Education. Her research interests include implementing

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xii About the Contributors

AAC within community, vocational, and social settings for adolescents with severe disabilities and complex communication needs. Specifically, she is interested in communication opportunities that occur during those activities and how to provide communication supports for both the individual with complex communication needs as well as the communication partner.

Andrea Barton-Hulsey, Ph.D., CCC-SLP, Assistant Professor, Florida State University, Tallahassee

Andrea Barton-Hulsey is an assistant professor in the School of Communication Science and Disorders at Florida State University. Her research is focused on understanding factors that support language and literacy development in children with intellectual and developmental disabilities. Her work is inclusive of children with limited speech ability who use AAC systems to support language and reading development.

Marie Moore Channell, Ph.D., Assistant Professor, University of Illinois at Urbana-Champaign

Marie Moore Channell is an assistant professor of speech and hearing science at the University of Illinois at Urbana-Champaign. Dr. Channell earned her doctorate in psychology with a concentration in developmental science from the University of Alabama. She also completed a postdoctoral fellowship at the University of California, Davis MIND Institute. Her research characterizes the development of cognitive, linguistic, and social-emotional skills that support everyday communication in individuals with Down syndrome and other disorders associated with intellectual disability.

Candace Evans, M.A., Doctoral Student, Georgia State University, Atlanta

Candace Evans is currently working toward her doctorate in developmental psychology at Georgia State University. Broadly, she is interested in the development of social-emotional competence and the role that language abilities play in social development in children who are atypically developing.

Evelyn L. Fisher, Ph.D., Postdoctoral Fellow, University of New Mexico Health Sciences Center, Albuquerque

Evelyn L. Fisher is a postdoctoral fellow in pediatric neuropsychology at Uni- versity of New Mexico. She completed her doctorate in clinical psychology with a specialization in neuropsychology at Georgia State University. She completed her internship at Kennedy Krieger Institute/Johns Hopkins School of Medicine in the neuropsychology and deaf/hard of hearing track. Her research and clinical

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About the Contributors xiii

interests involve maximizing language and communication outcomes among children with medical conditions and comorbid developmental disabilities, with a particular interest in assessment of AAC users.

Gregory M. Fosco, Ph.D., Associate Professor and Associate Director of the Edna Bennett Pierce Prevention Research Center, The Pennsylvania State University, University Park

Gregory M. Fosco is an associate professor of human development and family studies and serves as Associate Director of the Edna Bennett Pierce Prevention Research Center at The Pennsylvania State University. His work reflects an intersection of family, developmental, and prevention science. He studies family systems pro- cesses, including family-level, interparental, and parent–adolescent relationships, as they relate to adolescent developmental risk for substance use, challenging behavior, and internalizing problems, as well as the role of the family in promoting adolescent well-being. His other line of research focuses on evaluating evidence- based prevention programs such as the Family Check-Up and PROSPER.

Christine Holyfield, Ph.D., Assistant Professor, University of Arkansas, Fayetteville

Christine Holyfield is an assistant professor of communication sciences and disorders at the University of Arkansas. Her research is focused on evaluating AAC technology and strategies for individuals with intellectual and developmental disabilities, including individuals who are beginning communicators. She has presented and published both nationally and internationally on AAC. She teaches courses related to language disorders, language intervention, and AAC.

Gal Kaldes, M.A., CCC-SLP, Doctoral Student, Georgia State University, Atlanta

Gal Kaldes is a doctoral student at Georgia State University and a licensed speech- language pathologist. She has had both clinical and research experience with children who demonstrate significant language delays and benefit from AAC. Her research interests currently focus on grammar of children with language impairments and its influence on literacy development.

Raymond D. Kent, Ph.D., Professor Emeritus, University of Wisconsin–Madison

Following retirement from his faculty position at the University of Wisconsin– Madison, Dr. Kent continues to conduct research on speech development and disorders, especially on the topics of speech intelligibility in various clinical popu- lations, typical and atypical development of speech in children, and the use of acoustic methods in the study of speech development and disorders. His publica- tions include 19 books for which he has served as author or editor.

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xiv About the Contributors

Marika R. King, Ph.D., Assistant Professor, Utah State University, Logan

Marika R. King is an assistant professor in the Department of Communicative Disorders and Deaf Education at Utah State University. She completed her master’s degree in speech-language pathology at the University of New Mexico and her doctorate in developmental psychology at Georgia State University. Her research interests center around understanding and supporting the communication outcomes of bilingual children who use AAC.

Emily Laubscher, M.S., CCC-SLP, Speech-Language Pathologist, The Pennsylvania State University, University Park

Emily Laubscher is a speech-language pathologist and doctoral candidate in communication sciences and disorders. She has more than 10 years of experience working with individuals with complex communication needs. Her research aims to develop interventions for individuals who are beginning communicators and who require AAC.

Susan J. Loveall, Ph.D., Assistant Professor, University of Nebraska–Lincoln

Susan J. Loveall is an assistant professor in the Department of Special Education and Communication Disorders at the University of Nebraska–Lincoln. She received her doctorate in developmental science and cognitive psychology from the Univer- sity of Alabama and completed a postdoctoral fellowship at the Life Span Insti- tute at the University of Kansas. Her research focuses on learning, language, and literacy in intellectual and developmental disabilities, with a special focus on the Down syndrome phenotype.

Kelsey Mandak, Ph.D., AAC Research and Outreach Coordinator, The Pennsylvania State University, University Park

Kelsey Mandak is the AAC Research and Outreach Coordinator in the Department of Communication Sciences and Disorders at Pennsylvania State University. Through Kelsey’s research and teaching, she hopes to enhance our understanding of the challenges and benefits of family-centered AAC services, improve the implementation of such services, and identify effective ways to train preservice and in-service speech- language pathologists in acquiring family-centered knowledge and skills.

Emily D. McFadd, Ph.D., CCC-SLP, Postdoctoral Fellow, University of California Davis MIND Institute, Sacramento

Dr. Emily D. McFadd is a speech-language pathologist who received her doctorate from the Department of Communication Sciences & Disorders at the University

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About the Contributors xv

of Wisconsin–Madison. Her research focuses on understanding interactions between speech production and language skills for expressive communication in children with fragile X syndrome, Down syndrome, and autism. She has a special interest in AAC interventions for children with neurodevelopmental disorders who have limited speech.

David B. McNaughton, Ph.D., Professor, The Pennsylvania State University, University Park

Dr. David B. McNaughton teaches coursework in AAC, assistive technology, and collaboration skills for working with parents and educational team members. He is especially interested in the development and evaluation of online educational materials to build capacity in AAC service delivery. Dr. McNaughton’s research interests include literacy instruction for individuals who rely on AAC and employ- ment supports for individuals with severe disabilities.

Bobbi L. Rohwer, M.S., CCC-SLP, Doctoral Student, University of Minnesota, Minneapolis

Bobbi L. Rohwer is a doctoral student in the Speech-Language Hearing Sciences Department at the University of Minnesota and a 2018–2019 Minnesota LEND Fel- low. Prior to returning to academia, she worked as a pediatric speech-language pathologist specializing in complex communication needs and later as a content developer for a social skills app released in 2019.

MaryAnn Romski, Ph.D., CCC-SLP, Regents Professor, Georgia State University, Atlanta

Dr. MaryAnn Romski is Regents Professor of Communication, Psychology, and Communication Sciences and Disorders at Georgia State University, Director of the Center for Research on Atypical Development and Learning, and a founding member of the Center on Research on Challenges to Acquiring Language & Liter- acy. Dr. Romski is a certified speech-language pathologist with more than 40 years of clinical experience, a Fellow of the American Speech-Language-Hearing Asso- ciation (ASHA), the American Association of Intellectual and Developmental Disabilities (AAIDD), and the International Society for Augmentative and Alter- native Communication. She received ASHA Honors in 2015. Her research program focuses on the communication development of children with developmental disorders who encounter difficulty speaking, particularly the development and evaluation of computerized communication interventions. Dr. Romski has published three books, more than 100 articles and chapters, and has given numerous national and international presentations. She is AAIDD’s representative to the National Joint Committee on the Communication Needs of Individuals with Severe Disabilities (NJC).

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xvi About the Contributors

Stephanie L. Santoro, MD, Clinical Geneticist, Massachusetts General Hospital, Boston

Dr. Stephanie L. Santoro is a clinical geneticist dedicated to improving the health of patients with genetic syndromes. Her area of clinical expertise and research focus is Down syndrome.

Rose A. Sevcik, Ph.D., Regents Professor, Georgia State University, Atlanta

Rose A. Sevcik is a developmental psychologist whose work focuses on interventions in communication, language, and reading for children with a range of neurodevelopmental disabilities. She is the founding director of the Center on Research on Challenges to Acquiring Language & Literacy, a Fellow of the Ameri- can Speech-Language-Hearing Association (ASHA), the American Association of Intellectual and Developmental Disabilities, and the International Society for Aug- mentative and Alternative Communication.

Houri K. Vorperian, Ph.D., Senior Scientist, University of Wisconsin–Madison

Houri K. Vorperian established the Vocal Tract Development Laboratory in 1995 at the Waisman Center, University of Wisconsin–Madison, where she earned her doctorate degree in 2000 with Dr. Ray Kent’s mentorship. She is a full-time scientist directing the study of the biological basis of speech development with the lab’s mission to quantify the macroanatomic developmental changes of the oral and pharyngeal structures and cavities in typically and atypically developing individuals (e.g., Down syndrome, cerebral palsy), as well as speech acoustics, within the context of establishing anatomic-acoustic correlates to better understand the anatomic basis of speech development, production, and its disorders. Her research focus is on assessing structure/function interactions in shaping vocal tract structures with the ultimate goal of promoting multidisciplinary treatment approaches to enhance speech intelligibility and communication.

Casy Walters, M.Ed., CCC-SLP, Graduate Student, Georgia State University, Atlanta

Casy Walters is a speech-language pathologist and doctoral student in the Devel- opmental Psychology Department at Georgia State University. Casy’s research has examined the impact of early AAC intervention on speech sound development in toddlers. Prior to beginning her doctoral program, she worked as a speech- language pathologist in public school and private clinic settings.

Tara O’Neill Zimmerman, Ph.D., CCC-SLP, Assistant Professor, Misericordia University, Bellefonte, Pennsylvania

Tara O’Neill Zimmerman is an assistant professor at Misericordia University. Her primary area of interest is the design of aided AAC systems to meet the needs and skills of the individuals who use them. She is also interested in how the design of AAC systems can be responsive to family priorities and preferences in order to improve family-centered practice.

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Introduction to Down Syndrome and Augmentative and Alternative Communication

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Introduction to How Augmentative and Alternative Communication Can Promote Communication, Speech, and Language in Individuals With Down Syndrome Across the Life Span

Krista M. Wilkinson

Individuals with Down syndrome (DS) have diverse personal goals, preferences, and abilities, as well as unique social, academic, and vocational aspirations (National Down Syndrome Society, n.d.). Individuals with DS are a heterogenous and diverse group, but there are some phenotypic characteristics associated with the genotype, including certain physical, cognitive, language, and health sequelae. These phenotypic characteristics are outlined by Abbeduto and McFadd in Chapter 2 of this volume. Given the needs of individuals with DS, support services related to academic, social, health, vocational, and other valued outcomes must target strategies and skills that will enable these individuals to meet their goals and fulfill their aspirations to the maximal extent possible. Communication is key to achieving many, if not all, of these personal goals and aspirations. In particular, communication, speech, and language skills are funda- mental to promoting access to educational, vocational, social, and health care advocacy opportunities. Literacy provides an entrée into academics, jobs, and social media and is a foundation for social and professional advancement. Individuals with DS have documented difficulties in producing and comprehending spoken or written language (e.g., Kumin, 1994; Martin, Klusek, Estigarribia, & Roberts, 2009; see Chapter 3 for a detailed discussion of speech production in DS) that can present a barrier to achieving valued outcomes.

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4 Introduction to Down Syndrome and AAC

AUGMENTATIVE AND ALTERNATIVE COMMUNICATION The tools and techniques of augmentative and alternative communication (AAC) are one type of support that can help mitigate communication difficulties and promote optimal outcomes for individuals with DS across the life span. Laubscher and Wilkinson provide a detailed description of a variety of these tools and techniques (see Chapter 4). AAC is discussed with relation to specific topics in the other chapters in this volume. This chapter offers a brief introduction to AAC and multimodal communication for readers who are new to the approaches.

What Is AAC? AAC refers to methods for supplementing communication and language when speech is not meeting an individual’s full communication needs (Beukelman & Light, 2020). AAC includes the methods of communication and the interventions that help to optimize the effectiveness of these methods. Methods of AAC are typically classified as either aided or unaided. Aided forms of AAC include external devices such as low-technology books containing letters or symbols or high-technology aids that produce written or spoken output upon activation. The physicist Stephen Hawking is one well-known individual who used aided AAC; he used a switch to gain access to letters and phrases on a high-technology aided AAC device that then translated his input into speech and written output. Unaided forms of AAC include any form of communication that involves the body, from facial expressions and body posture to gestures, pointing, or signed languages such as American Sign Language. AAC is an evidence-based means to support optimal communication in individuals with developmental disabilities (including DS) and in individuals with acquired disabilities (Beukelman & Light, 2020). In addition to teaching individuals to use these methods of communication, instruction for communication partners in interacting with a person who is communicating via AAC helps to optimize the effectiveness of the intervention (Kent-Walsh & McNaughton, 2005). Partner instruction has been reported by speech-language pathologists in a survey to be one of the top contributors to suc- cessful adoption of AAC systems (Johnson, Inglebret, Jones, & Ray, 2006). Studies have demonstrated that brief teaching sessions, including ones that are conducted online, positively affect how communication partners interact with individuals who use AAC (Binger, Kent-Walsh, Berens, Del Campo, & Rivera, 2010; Binger, Kent-Walsh, Ewing, & Taylor, 2010; Douglas, Light, & McNaughton, 2013; Douglas, McNaughton, & Light, 2014). A meta-analysis of the effectiveness of communication partner instruction has underscored the importance of this element of AAC intervention (Kent-Walsh, Murza, Malani, & Binger, 2015).

What Is Multimodal Communication? Multimodal communication refers to the fact that everyone communicates via a diverse range of methods. Even individuals who use natural speech as their primary mode of expression do not typically rely solely on speech; they use inflection and prosody to emphasize or even change meaning (turning a statement such as “the car is blue” into a question by altering the prosody—“the car is blue?”), they

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How AAC Promotes Communication, Speech, and Language 5

use gestures and facial expressions for similar purposes (an eye roll can reverse the meaning of a statement such as “sure”), and they use written prompts and alarms on their smartphones to make lists, remind them of appointments, and so forth. Even for individuals who use speech, the act of communication incorporates a diverse set of behaviors that enrich the meaning and nuance of the messages being expressed and understood. The importance of diverse forms of communication is also true for individuals who might rely on AAC as a primary or supplementary form of communication. An individual who uses a high-technology form of AAC will also have a rich set of unaided communication behaviors that can supplement or even provide different communication functions for that individual. For instance, idiosyncratic communication forms (e.g., signs, facial expressions) may not be well understood by unfamiliar communication partners. Aided AAC systems are often critical in these situations because the feature of voice output offers an important conven- tional means of expression to promote understanding by the unfamiliar partner. Aided AAC, however, is often slow in terms of the rate of message preparation (Beukelman & Light, 2020). Individuals might therefore prefer to rely on idiosyncratic or unaided modes of communication with highly familiar communication partners, such as close family and friends. Thus, a main takeaway in any discussion of AAC is recognizing that there are diverse forms of communication that can supplement one another and, in some cases, serve different functions for an individual.

Multimodal Communication Across the Life Span Related to this discussion is the important point that the communication needs and challenges of individuals change across the life span. A young child who is at the outset of linguistic development and is communicating primarily with familiar partners (a small group of family, friends, and perhaps child care) has different communication needs and challenges than an older child who is making the transition into kindergarten where he or she will be interacting with a larger group of unfamiliar partners and experiencing formal academic content. New demands on expression and comprehension occur when children begin to be exposed to literacy instruction as well as when they enter into the more informal uses of literacy on social media. The demands of self-advocacy grow and are indeed incorporated into academic planning as individuals reach adolescence, and new challenges emerge for communication around the social, vocational, or educational endeavors of adulthood. Thus, it is important to consider the applications of AAC throughout the life span, understanding that the types of communication challenges will vary across ages and contexts.

PURPOSE AND FRAMEWORK OF THIS BOOK The goal of this book is to present an interdisciplinary approach to maximizing speech, language, communication, and literacy success for individuals with DS over their life span and across social, family, academic, health care, and adult/vocational contexts. The chapters in this book focus on how multimodal AAC can help support the expressive and receptive speech, language, and literacy skills of individuals with DS. The book is intended to offer useful information to readers with diverse forms of contact with individuals with DS, from family members to professionals

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6 Introduction to Down Syndrome and AAC

with whom the individual will interact (e.g., educators, occupational or physical therapists, speech-language pathologists, employers, health care professionals). This book emphasizes how AAC can support participation in meaningful and valued activities as the primary outcome measure of interest. This approach is in keeping with the World Health Organization’s (2001) International Classification of Functioning, Disability and Health, which has been applied broadly across health- related fields (e.g., Pless & Granlund, 2012; Simeonsson, Björck-Åkessön, & Lollar, 2012). This framework underscores the importance of considering an individual’s functioning within the larger context of the personal and social (community) supports available to that individual. The framework also emphasizes that the desired outcome of intervention is to promote participation in activities that are meaningful and relevant to the individual and his or her interests. The different ways in which participation can be supported via AAC are infused throughout the chapters, including participation in meaningful social, academic, and vocational activities and in important roles such as self-advocacy for health care participation and transition planning.

RATIONALE FOR PROVIDING AAC SUPPORTS FOR INDIVIDUALS WITH DOWN SYNDROME A detailed discussion of how to supplement expressive and receptive speech and language skills in individuals with DS is urgently needed for several reasons. These include issues related to 1) the early developmental trajectory and outcomes in speech and language in individuals with DS, 2) difficulties of articulation and intelligibility in individuals with DS even after speech has emerged, 3) the presence of intellectual disability and its implications not only for expression but also for comprehension of spoken or AAC input, 4) the changing communication demands that occur over the life span, 5) the increased risk for cognitive decline (Alzheimer’s disease) at earlier ages in individuals with DS, and 6) the changing role of the individual within and outside the family unit as the individual becomes independent.

Early Developmental Trajectory in Individuals With Down Syndrome Although individuals with DS may follow a typical sequence of communication and speech development, the age at which speech begins to emerge is typically later than their peers. It is critical to provide children with DS tools for language development via AAC, even before speech emerges, to support their overall development. Moreover, AAC can provide a means to jumpstart language and related cognitive development in order that young children with DS do not fall further behind their peers with typical development. As Romski and colleagues (see Chapter 5) clearly demonstrate, provision of AAC early in life does not in any way interfere with speech development, but rather AAC can offer important communication opportunities and experiences.

Difficulties With Speech Intelligibility Once speech emerges, it may not meet all of the communication needs of individuals with DS, particularly in settings with unfamiliar communication partners. For instance, Kumin (1994) noted that 95% of parents reported that their child’s

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How AAC Promotes Communication, Speech, and Language 7

speech is not fully intelligible to unfamiliar communication partners, causing Martin and colleagues (2009) to conclude that “nearly all individuals with DS may be difficult to understand at least some of the time” (p. 115). The reasons for this difficulty relate to physical, motoric, and potentially cognitive impairments, and these are outlined by Kent and Vorperian (Chapter 3). Because of this continued difficulty with speech intelligibility, AAC could be beneficial to promote optimal communication outcomes in individuals with DS, which is explored in all of the chapters of this volume.

Presence of Intellectual Disability and Implications for Comprehension The presence of intellectual disability as well as vision and/or hearing loss can mean that comprehension of spoken language input may also be compromised. Promoting comprehension of input is critical to virtually all valued outcomes, from engaging with family, friends, and colleagues to self-advocacy within vocational and health care settings. Limitations in comprehension can lead to restrictions in the ability to engage maximally within school or vocational settings and can lead to unconventional or challenging behaviors and the onset of negative social conse- quences (withdrawal or isolation). The role of AAC in supporting understanding is a theme in most of the chapters of this book. For instance, implementation of AAC is explored with regard to how it can support language comprehension in early development (Romski et al., Chapter 5), in the school years (Finestack & Rohwer, Chapter 6), and in health care settings (Santoro, Chapter 10) as well as with regard to the specific issues individuals with DS may have in signaling difficulty understanding when communication breakdown occurs (Abbeduto & McFadd, Chapter 2; Channell & Loveall, Chapter 8). Providing AAC as a means to support understanding and coping with new situations is a theme that emerges when considering transitions (McNaughton, Babb, & Holyfield, Chapter 7) and health care provision (Santoro, Chapter 10). Targeting literacy as a means to support both comprehension and self-expression across these contexts is a key outcome, and it is discussed in detail by Barton-Hulsey and Sevcik (Chapter 11).

Changing Communication Demands Across the Life Span Difficulty with speech production will affect communication effectiveness across a wide range of contexts and partners across the life span. Each context presents different demands on individuals, so speech might meet their needs in some contexts but not in others. Romski and colleagues (Chapter 5) illustrate how implementing AAC supports for children with DS from the youngest ages, in ways that are consistent with family preferences and abilities, provides a foundation for development of language (including both speech and AAC). Promoting expression via a combination of AAC and speech continues to be of utmost importance as children enter school, where they interact with many unfamiliar students and teachers and begin to focus on important academic and literacy outcomes. These issues are explored in detail by Finestack and Rohwer (Chapter 6) and Barton-Hulsey and Sevcik (Chapter 11). When individuals make the transition into adolescence, adulthood, and work, they must interact with co-workers, supervisors, and potentially

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8 Introduction to Down Syndrome and AAC

customers in service industries; these topics are discussed by Channell and Loveall (Chapter 8) and McNaughton et al. (Chapter 7). As individuals experience a greater range of environments and interact with a larger number of unfamiliar partners, AAC is of critical importance for effective communication within those environments and also as a means to protect against potential discrimination, bullying, or abuse by allowing the individual an effective method of self-expression about these possible experiences.

Increased Risk for Cognitive Decline at Earlier Ages As discussed by Channell and Loveall (Chapter 8), individuals with DS are at greater risk for cognitive decline associated with dementia or Alzheimer’s disease than people in the general population, and the onset of cognitive decline appears to be earlier in individuals with DS, emerging as early as 40 years (Ballard, Mobley, Hardy, Williams, & Corbett, 2016; Zigman & Lott, 2007). Approximately 70%–80% of older adults with DS will develop clinical symptoms of Alzheimer’s disease (Zigman, 2013). It is critical to have AAC supports in place for several reasons. AAC systems will be necessary to promote maintenance of comprehension and expressive skills, to the extent possible, particularly if the individual moves to a residential facility for care (with many unfamiliar communication partners). These systems may also play an important role in ongoing assessment of functioning and decline.

Changing Role of the Individual Within and Outside the Family Unit The role of an individual within a family evolves from childhood through adolescence and adulthood, and, thus, AAC supports need to be responsive to both the family system and to the changing relationships within it, a topic explored by O’Neill, Mandak, and Fosco (Chapter 9). Throughout life, individuals with DS will need to gain access to health care, where they must be able to communicate effectively with health care providers, understand what to expect during medical appointments and procedures, and self-advocate during the process, a topic explored by Santoro (Chapter 10).

CONCLUSION AAC supports can offer critical benefits to individuals with DS across their life span for situations in which their speech is not meeting their daily communication needs. AAC allows individuals to communicate for multiple functions, including making basic requests, transferring information, establishing social closeness, and promoting linguistic development. Some individuals with DS may require AAC across many or most settings; for others, AAC may supplement existing speech in certain situations. Both unaided and aided AAC can be incorporated for a given individual, and these will support the full range of multimodal communication that includes speech and nonverbal forms of communication. It is of particular importance to ensure that AAC is integrated within the family unit because the family remains a key context for development throughout the life span. AAC can promote early language development; support academic, literacy, and other skills during elementary school years as well as adolescence; foster transitions to

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How AAC Promotes Communication, Speech, and Language 9

adulthood; support comprehension and expression as individuals with DS age and experience Alzheimer’s disease; promote engagement in health care; and enhance participation in valued roles in society.

REFERENCES Ballard, C., Mobley, W., Hardy, J., Williams, G., & Corbett, A. (2016). Dementia in Down’s syndrome. Lancet Neurology, 15, 622–636. doi:10.1016/S1474-4422(16)00063-6 Beukelman, D. R., & Light, J. C. (2020). Augmentative and alternative communication: Support- ing children and adults with complex communication needs (5th ed.). Baltimore, MD: Paul H. Brookes Publishing Co. Binger, C., Kent-Walsh, J., Berens, J., Del Campo, S., & Rivera, D. (2010). Teaching Latino parents to support the multi-symbol message productions of their children who require AAC. Augmentative and Alternative Communication, 24, 323–338. doi.org/10.1080/07434610802130978 Binger, C., Kent-Walsh, J., Ewing, C., & Taylor, S. (2010). Teaching educational assistants to facilitate multi-symbol message productions of young students who require AAC. American Journal of Speech-Language Pathology, 19, 108–120. Douglas, S. N., Light, J. C., & McNaughton, D. B. (2013). Teaching paraeducators to support the communication of young children with complex communication needs. Topics in Early Childhood Special Education, 33, 91–101. doi:10.1177/0271121412467074 Douglas, S. N., McNaughton, D., & Light, J. (2014). Online training for paraeducators to support the communication of young children. Journal of Early Intervention, 35, 223–343. doi.org/10.1177/1053815114526782 Johnson, J. M., Inglebret, E., Jones, C., & Ray, J. (2006). Perspectives of speech-language pathologists regarding success versus abandonment of AAC. Augmentative and Alterna- tive Communication, 22, 85–99. Kent-Walsh, J., & McNaughton, D. (2005). Communication partner instruction in AAC: Present practices and future directions. Augmentative and Alternative Communication, 21, 195–204. doi/abs/10.1080/07434610400006646 Kent-Walsh, J., Murza, K. A., Malani, M. D., & Binger, C. (2015). Effects of communication partner instruction on the communication of individuals using AAC: A meta-analysis. Augmentative and Alternative Communication, 31, 271–284. doi.org/10.3109/07434618.2015 .1052153 Kumin, L. (1994). Intelligibility of speech in children with Down syndrome in natural settings: Parents’ perspective. Perceptual and Motor Skills, 78, 307–313. Martin, G. E., Klusek, J., Estigarribia, B., & Roberts, J. E. (2009). Language characteristics of individuals with Down syndrome. Topics in Language Disorders, 29, 112–132. National Down Syndrome Society. (n.d.). Retrieved from https://www.ndss.org Pless, M., & Granlund, M. (2012). Implementation of the international classification of functioning, disability, and health (ICF) and the ICF children and youth version (ICF-CY) within the context of augmentative and alternative communication. Augmentative and Alternative Communication, 28, 11–20. doi.org/10.3109/07434618.2011.654263 Simeonsson, R. J., Björck-Åkessön, E., & Lollar, D. J. (2012). Communication, disability, and the ICF-CY. Augmentative and Alternative Communication, 28, 3–10. doi.org/10.3109/07434618 .2011.653829 World Health Organization. (2001). International classification of functioning, disability and health. Geneva, Switzerland: Author. Zigman, W. B. (2013). Atypical aging in Down syndrome. Developmental Disabilities Research Reviews, 18, 51–67. doi:10.1002/ddrr.1128 Zigman, W. B., & Lott, I. T. (2007). Alzheimer’s disease in Down syndrome: Neurobiology and risk. Mental Retardation and Developmental Disabilities Research Reviews, 13(3), 237–246. doi:10.1002/mrdd.20163

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Wilkinson_ch01_p1-10.indd 9 09/09/20 3:04 PM EDUCATION / SPECIAL EDUCATION / DOWN SYNDROME & Finestack Wilkinson

Speech-Language-Hearing: Sciences and Disorders; Investigator, Schiefelbusch Institute for Life Span Studies MU LTI

• Use AAC to boost older children’s language skills R I

• Support communication and self-advocacy across health care settings with AAC strategies S WIT

Augmentative and Alternative Communication Series Series Editors: David R. Beukelman, Ph.D., & Janice C. Light, Ph.D.

experienced by the diverse range of individuals who use AAC. Developed for all affected by AAC issues, this series is

ISBN-13: 978-1-68125-412-8 ISBN-10: 1-68125-412-3 900 0 0 Krista M. Wilkinson Lizbeth H. Finestack 9 781681 254128 >